Day Surgery

Tomorrow we report to TCH at 7am for an exam under anesthesia for your glaucoma  It's pretty routine stuff, we've done it half a dozen times before. They will put you under, check your eye pressures, and then hopefully pull you back out.  We could be home by noon.

Unless...

...the doctor doesn't like what he sees. And if you are trending in the same direction you have been that might be the case. From infancy you were on one drop per eye each day. After about a year we bumped it to the same drop twice a day. Last year we added a whole different drop in addition to the other one.  If the exam tomorrow shows your pressures are still on the rise, they may go ahead and place a shunt in each eye.  It's been a few years since we seriously discussed that possibility, so my understanding of the process is far from complete. I'm about to do a little research before heading to bed.

Your sight is so fragile--any surgery to your eyes gives me good reason to be concerned. But if your pressures are high, there isn't much alternative. Glaucoma left untreated will result in certain blindness.

You, my sweet one, sleep well. Tonight we pray that our trip to the hospital tomorrow will be a short, uneventful one and we can get home early to begin our Easter weekend celebration!

103rd Day

Tuesday you got off the bus looking precious in your 100th day of school glasses. From what I can tell on FB, this is a pretty big deal. I had no idea. So I didn't take this photo until Friday, the 103rd day of school.  Adorable nonetheless, am I right?

Hurrah for 103 days of school!

Of course your brother has to get in on the action.

Fashionably Tiny

Milestone day!

Today I moved all of your 3-6 month pants out of your closet. Really they still fit you great in the waist, but are much too short, even to pass as capris. So now you are officially only in 9mo or larger pants! As for tops, 12mo or 18mo are ideal for your length.  I just choose not to notice how baggy they are. Size 3 shoes still fit perfectly.

One thing can be said for staying little: you can wear the same clothes for years. And that translates into quite the wardrobe for my little fashionista! 

Max Rate Reached!

After twelve days of bumping up your feed rate, you are now at the maximum speed of 400 mls/hr. You get your entire feed in 15 minutes! So if we leave the house after you eat and know that we will be back  within four hours, I can leave the pump, milk, and cooler at home. FREEDOM!

The best part is that since we have made the change you are vomiting much less than ever before. I am so impressed with you!

Friday after school we will begin slowly add volume to your feeds.  Probably just water to start--I think extra hydration alone will do wonders for you. Eventually we will throw some calories in there.  Audrey, this is exciting stuff!

Happy Mistake

Today I made a mistake that led to a shocking discovery.

I clean out your pump bag each morning by changing the rate from your usual 78ish ml/hr to 400 ml/hr, and letting hot water run through the tubing while I do other things.  Then I change it back for your 8am feed. Today you stayed home from school--you are recovering for some tummy bug or an Audrey episode--and slept till nearly noon. When I woke you up, I noticed the settings were still at 400 mls/hr.

Ugh.  Immediately I kicked myself. This is no small mistake. The consequences could be...then it dawned on me. Why weren't you vomiting? On a good day I would have expected you to send it all back up at once, but even sick you had kept everything down.

I have been told by a few other SLOS moms that their kids do better if given their feeds quickly all at once rather than slowly over time. It seems counter-intuitive to fill you up since you have such slow motility, but it seems as if a longer break does the tummy good. I have always wanted to try feeding you faster, but had visions of popping your small stomach with too much volume. So I inched it up and then backed it down whenever you got sick. Up and down, again and again.  When Luke was born priorities shifted until I forgot all about increasing your rate.

But this morning shows me I can make more aggressive changes and can possible expect better results. My plan for now is to increase each feed by 10 mls/hr until you start showing signs of discomfort. It will be amazing if we can significantly decrease the amount of time you eat each day, giving you more freedom from the pump.  Ultimately my hope is that fast feeds mean quicker digestion which might allow me to feed you more frequently. And that may result in your first weight gain in over two years! You, my tiny (but mighty) Shnook, need to bulk up.

Death to Blogger

Blogspot,

We have had our issues in the past. But as of today you are dead to me.

I was using my phone to edit the post I just wrote when you deleted the whole dang thing. Poof! As if it never existed.  It wasn't a particularly good post but I'd rather not have to rewrite it. Oh, and about that app update I installed yesterday--I think it's got a bug.

If you decide to repent and make that post reappear tomorrow, I might be able to forgive this grievous offense.  Otherwise we are going to have to figure out how to slide this thing on over to wordpress.

Consider yourself warned Blogger.

Do Not Be Anxious

It's looking like we are a go for surgery tomorrow. We did chest X-Rays and an RSV test to make sure your mild congestion is just that, and everything came out clear.  So we will report for duty at 5:30am and if all goes as planned we should be home in time for your afternoon nap.

Your first year of life brought at least 12 surgeries--at some point I lost count. During that time I assumed we would always be regulars at the TCH OR. A month before Liam was born we placed your shunt, and an incision hasn't been made since.  That in itself is miraculous--50% of shunts have to be replaced within the first two years. But here we are sitting pretty at 3 years and 1 month.

Clearly I am no newbie to sending my children into surgery and this one is minor compared to others. Then why so anxious? Because losing a child changes everything.  And when I let my brain swim in the dangerous waters of "what if"....what if there are complications? what if something goes very wrong? what if I have to leave the hospital without a baby again?...I feel the despair engulfing me, pulling me down into the abyss. It is all I can do to twist out of it's clutches, push for the light and gasp for air the instant it hits my skin. But as I stand dripping on the shore, remembering those seconds trapped below, I am certain another loss could be my undoing. Please Jesus let it not be so.

Yet this evening, a peace settled over my heart.  My tension melted away. God has always held you firmly in his hand, ordained your days. I know his plan for you is good.  I know his plan for ME is good. So I will not be anxious. I will let the peace of God which transcends all understanding guard my heart and my mind in Christ Jesus.  Over this surgery and the rest of your days.

(Update 11/16: I listened to this sermon by Steven Furtick this afternoon.  Would have been ideal for yesterday, but I still think it is worth posting here as a reminder for the next time I feel anxious.


Anxiety: Worry Don't Work
www.elevationchurch.org/sermons/treatment/part1 )